Why did we fail? Challenges recruiting parents with cancer into a psycho‐educational support program

Sinclair, Michelle; Newman, Louise; Rauch, Paula K.; Bartoň, Michael; Gilham, Leslie; Cannell, Julia; Mason, Kylie D.; Joubert, Lynette; Hocking, Alison; Little, Ruth

doi:10.1002/pon.5226

Cited by 14 publications

(17 citation statements)

References 12 publications

(25 reference statements)

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“…This can be compared with a recent study that failed to recruit parents with cancer and their co-parents to a psycho-educational intervention aiming to support parenting. The authors reported that the families’ reasons for declining were medical, parenting, and work commitments (Stafford et al, 2019). The FTI in the present study was delivered to the whole family, as well as children, in the family home at times that suited each of the families, which might have increased the participation rate.…”

Section: Methodological Considerationsmentioning

confidence: 99%

The Family Talk Intervention in palliative home care when a parent with dependent children has a life-threatening illness: A feasibility study from parents’ perspectives

et al. 2020

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Objective One of the main goals of the Family Talk Intervention (FTI) is to increase communication within families with dependent children about illness-related consequences and to support parenting. FTI is family-centered and includes six manual-based meetings led by two interventionists. This study aims to evaluate the feasibility of the FTI in terms of acceptability from the perspective of parents in families with dependent children where one parent receives specialized palliative home care. Method A descriptive design employing mixed methods was used to evaluate the FTI in specialized palliative home care. In total, 29 parents participated in interviews and responded to a questionnaire following FTI. Qualitative content analysis and descriptive statistics were used for analyses. Results FTI responded to both the ill parent's and the healthy co-parent's expectations, and they recommended FTI to other families. Parents found the design of FTI to be well-structured and flexible according to their families’ needs. Many parents reported a wish for additional meetings and would have wanted FTI to start earlier in the disease trajectory. Parents also would have wished for a more thorough briefing with the interventionists to prepare before the start. The importance of the interventionists was acknowledged by the parents; their professional competence, engagement, and support were vital for finding ways to open communication within the family. The FTI meetings provided them with a setting to share thoughts and views. Parents clearly expressed that they would never have shared thoughts and feelings in a similar way without the meetings. Significance of results According to parents, FTI was found acceptable in a palliative home care context with the potential to add valuable support for families with minor children when a parent is suffering from a life-threatening illness.

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Section: Methodological Considerationsmentioning

confidence: 99%

The Family Talk Intervention in palliative home care when a parent with dependent children has a life-threatening illness: A feasibility study from parents’ perspectives

et al. 2020

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“… 14 To better understand the barriers impeding recruitment for patients with cancer, Stafford et al conducted interviews with recruiters. 15 Some of the barriers they found for insufficient accrual rate were delays in receiving multisite ethics and governance approval, physical relocation of one of the recruitment sites, timing of the study in relation to the participant’s cancer journey and perceived burden of participation. 15 While an obvious problem can be that researchers specify inclusion criteria that are too restrictive or aim to include more tasks than the participant can handle, external circumstances out of the researchers’ power to influence, are seldom discussed.…”

Section: Introductionmentioning

confidence: 99%

External barriers for including parents of preterm infants in a randomised clinical trial in the neonatal intensive care unit in Sweden: a descriptive study

et al. 2020

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ObjectivesPerforming randomised controlled trials (RCTs) in neonatal intensive care is challenging in many ways. While restrictive inclusion criteria or busy study protocols are obvious barriers, external barriers leading to termination of a study are seldom discussed. The aim of this study was to describe barriers for inclusion of families in neonatal intensive care in an RCT aiming to evaluate the effects of continuous skin-to-skin contact on mood and sleep quality in parents of preterm infants, as well as the quality of parent-infant interaction and salivary cortisol concentrations at the time of discharge.DesignA descriptive study.SettingThree out of seven tertiary neonatal intensive care units in Sweden participated in a two-arm RCT that was terminated because of low inclusion rate.ParticipantsBefore termination of the study, 11 out of 242 families assessed for eligibility were included for participation.ResultsThe major barriers for inclusion in this RCT were external due to (1) lack of intensive care beds in the neonatal ward, causing medically stable infants to be transferred back to the referring hospital quicker than expected, (2) moving directly from the delivery room to a family room without passing an open bay intensive care room or (3) transferring from one neonatal ward to another with the same care level to increase availability of intensive care beds where needed. Other barriers were the inclusion criteria ‘single-birth’ and ‘Swedish-speaking parent’.ConclusionsThe major barriers for including participants were external constituted by transferals between neonatal wards and cities due to lack of intensive care beds. This is a multifactorial issue related to organisational structures. However, since this affects the possibilities to perform research this study highlights some suggestions to consider when planning prospective intervention studies within a neonatal setting.Trial registration numberNCT03004677.

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“…Research is needed to understand, not only the points at which AYAs are likely to gain most benefit from different forms of intervention, the relative benefits of structured versus unstructured peer-support interventions, the ideal composition for peer-group based interventions, the appropriateness of each support model for AYAs with varying degrees of distress, and importantly, when AYAs are most likely to take up these opportunities. Other research evaluating parent- and family-based interventions in oncology has indicated that perceived need, acceptability, and intervention uptake are often unrelated, and while families may express wanting interventions at a certain points of crisis (e.g., diagnosis), this may not translate into intervention uptake when given the opportunity [ 125 , 126 ]. Our data may indicate that AYAs gain greater benefit from structured, skills-based programs further into survivorship—a proposition requiring further study.…”

Section: Discussionmentioning

confidence: 99%

Online, Group-Based Psychological Support for Adolescent and Young Adult Cancer Survivors: Results from the Recapture Life Randomized Trial

Sansom-Daly

Wakefield

Ellis

et al. 2021

Cancers

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Telehealth interventions offer a practical platform to support adolescent and young adult (AYA) cancer survivors’ mental health needs after treatment, yet efficacy data are lacking. We evaluated an online, group-based, videoconferencing-delivered cognitive-behavioral therapy (CBT) intervention (‘Recapture Life’) in a 3-arm randomized-controlled trial comparing Recapture Life with an online peer-support group, and a waitlist control, with the aim of testing its impact on quality of life, emotional distress and healthcare service use. Forty AYAs (Mage = 20.6 years) within 24-months of completing treatment participated, together with 18 support persons. No groupwise impacts were measured immediately after the six-week intervention. However, Recapture Life participants reported using more CBT skills at the six-week follow-up (OR = 5.58, 95% CI = 2.00–15.56, p = 0.001) than peer-support controls. Recapture Life participants reported higher perceived negative impact of cancer, anxiety and depression at 12-month follow-up, compared to peer-support controls. Post-hoc analyses suggested that AYAs who were further from completing cancer treatment responded better to Recapture Life than those who had completed treatment more recently. While online telehealth interventions hold promise, recruitment to this trial was challenging. As the psychological challenges of cancer survivorship are likely to evolve with time, different support models may prove more or less helpful for different sub-groups of AYA survivors at different times.

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Why did we fail? Challenges recruiting parents with cancer into a psycho‐educational support program

Cited by 14 publications

References 12 publications

The Family Talk Intervention in palliative home care when a parent with dependent children has a life-threatening illness: A feasibility study from parents’ perspectives

The Family Talk Intervention in palliative home care when a parent with dependent children has a life-threatening illness: A feasibility study from parents’ perspectives

External barriers for including parents of preterm infants in a randomised clinical trial in the neonatal intensive care unit in Sweden: a descriptive study

Online, Group-Based Psychological Support for Adolescent and Young Adult Cancer Survivors: Results from the Recapture Life Randomized Trial

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